Heart of Beckett

UPDATE (3/14/13)

Psalm 119:105
Thy word is a lamp unto my feet, and a light unto my path.

I was reaffirmed with this scripture multiple time these past few days by way of a fantastic conversation with Dr. Habecker (Taylor’s President), and in one of my classes from my professor, Dr. Bedi (Provost Emeritus). I feel as if God is simply trying to pound this principle into my thick skull:
‘One. Day. At. A. Time, Jonny.’ (my paraphrase)
I am also reminded once again of Matthew 6:34 – ‘Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.’ I know I’ve shared this idea multiple times before, but please humor me as I therapeutically just need to consistently be reminded of this truth. This concept is by far the best and most helpful advice I’ve received throughout this entire journey. Live your days one at a time, do not worry about tomorrow, just take it one step at a time.

Now onto the main event. How cute is lil Beckett in this picture?! I mean, come on…it doesn’t get much better than this (sorry, I cannot help it). I was in classes all day today and did not get down to Indy until nearly 7:00pm. I wanted to come back to his room after dinner to snap a few pictures of him smiling for you guys, but he was ‘sleeping like a baby’. However, when I had first got there this evening he wouldn’t stop smiling…ear to ear…it was awesome! I think I was just so infatuated with it I forgot to take any pictures. I’ll post some more soon though. (this picture is one I stole from Leah’s phone….it was taken earlier today)

He just looks so comfortable. Leah said that they weaned his fentanyl again today, weaned his VapoTherm some more, and increased his feedings. These are very encouraging steps in the right direction. Unfortunately, we are conditioned to watch for the next bad thing to happen (that’s not something I’m proud of, but it’s true). But I’ll conclude with this passage sent to us from a good friend.

2 Corinthians 4:17-18
For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.

Hey guys, Beckett here. I just wanted to take a moment and thank you all for your thoughts and prayers for me, especially this last week. Yeah, I know I’ve been through much worse, but having this tube put in and then taken out to then just be put back in again is tiring…and to be quite honest, it’s not very comfortable. But I’ve beaten off a few infections this past week and am being told that the Doctors really do think I’m ready to have this tube taken out later this afternoon once and for all.

It’ll be good to hear my voice again. I know it’s cute because people always gather around when I use it, especially my parents.

My mother hasn’t left my side since I was born, and for that I will always be so thankful. Daddy has to leave here-n-there, but I know it’s for the good of his family he is trying so hard to take care of. They aren’t perfect, but I definitely know they love me!

I cannot wait to meet you all. Thanks for caring so much for me, even though many of you haven’t ever even met me. And thank you for encouraging my parents. I can tell when they are renewed from a lil message they’ve read, or an unexpected visitor stopping by just to hug and encourage them. They always come back so reenergized.

And to my family, grandmas/grandpas, cousins, aunts/uncles, great grandparents, extended family….a big fat thank you! It’s amazing how much you care and love me as if I was your actual son.

And lastly to the doctors and nurses who look after me. To be quite honest, I wouldn’t still be here without your wisdom, skill, and consistent care. Thank you for helping me out when my body just wasn’t able to do it on its own.

And to my God. I’ve been told that there have been moments when the skilled physicians weren’t able to help me much more and you would step in and save the day. Thank you for using my lil heart condition to display your power and love for not only me, but for all who love and care for me.

I will grow up trained to follow the guidance of your words found in scripture. I know my parents will train me in the way I should go, and I will not depart from it. Please use my life to share your love and your grace to all I meet.

Again, I hope to meet you all soon. I’m on my way out of here…I just know it!

UPDATE (2/26/13)
Beckett had a good day…much better than yesterday. As we walked into the room this morning there were four women just gawking at Beckett. One of them who saw me first said, ‘nothing is wrong, we are all just looking at your son’. Then one nurse said to the other nurse (sounds like the beginning of a bad joke, doesn’t it?) ‘Wow…yup, he’s as cute as you said he was. Good job you guys!’ It’s funny to watch the effect he is having on women at such an early age. 😉 What a heart throb!Maybe an hour later our nurse poked her head into our room and said, ‘you’re gonna love me…..we’re gonna try to bottle feed!’ Leah and I looked at each other with shock and excitement. Beckett handled it ‘well’. He only drank about 2 ml, but did well with it for everything he’s been through. His speech therapist was pleased for his first attempt (other than his real first attempt on day 1 before we became aware of his HLHS).

I then held him for quite a while waiting for the PICC team to come and put in his new PICC line. It was quite nice…just me and him. Leah was sleeping in a recliner in the room and the nurse didn’t come in for quite a while. …..I love my son! 😉 The PICC team finally arrived and worked their magic. It really wasn’t that bad because they gave Beckett a lil of his favorite drug (morphine) and some sedation medicine as well. He fell right to sleep.

His MRSA is truly looking better (just to provide you with a little update on that). We are actually quite pleased with how well he is responding to the antibiotics and treatment. Soooo, I guess, and as always….Go Beckett! 🙂

Beckett is continuing to gain weight. Yay! He’s now up to 7 lbs and 14 oz.This is great news, and yet another area in which we can truly celebrate.

He was going to possibly have another MRV today (to check out the progress of breaking down the clot in his brain), but they have decided to wait until next week. Though we are fine with that, we are quite eager to hear the results. We obviously are hoping for a decrease in size of that clot, or possibly for it to just be gone entirely (unlikely, but you never know!!)

Lastly (and I cannot recall if I’ve shared this yet or not…but it’s just so darn cute), we keep hearing about all these children praying for Beckett. That just melts our hearts. But even cuter, it seems like a growing trend that Baby Beckett isn’t necessarily being prayed for, but rather Baby Bucket. Ha, too cute!

I’ll leave you with some closing scripture. Let us be reminded daily who we serve and give praise to. My mother shared these with me today, and I just had to pass them along:

“The testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing” James 1:3-4

“Wait for The Lord; be strong, and let your heart take courage; wait for The Lord!” Psa 27:14

….we are waiting patiently to take Beckett home…not too soon, and not too late. All in God’s timing.